Max’s ordeal began in Autumn 2016, when he was just 8 years old, with what we thought was a fairly innocent but persistent cough.
We were back and forth to our GP who initially diagnosed asthma and prescribed an inhaler and steroids. But the cough persisted so the GP sent Max to our local hospital for a chest X ray on December 6th 2016. A couple of days after that Max took a real turn for the worse. He was persistently vomiting and coughing in a strange way that didn’t sound like an asthmatic cough.
By this time, we were really worried and called 111, having no idea at the time how serious Max’s condition was. The 111 doctor told us to call an ambulance immediately and he was taken to Leighton Hospital in Crewe. The doctor took one look at the chest x-ray and told us to our horror that Max had a very enlarged heart. He was kept in hospital but before they could do any more tests, Max just collapsed. We didn’t know it at the time, but shockingly, doctors later told us that he’d literally been teetering between life and death at that point.
“He’d literally been teetering between life and death at that point”
He was blue-lighted to Manchester Royal Children’s Hospital. I went with him in the ambulance but I was told ‘by the time we get to the hospital Max might fall of his perch.’ That might sound strange but even though my brain was registering they were telling me Max might not survive, hearing it put that way was much gentler and kinder.
My husband Paul had gone to pick up our older son Harry from school and met us at the hospital. Max was rushed straight in to the ICU where he stayed for the next four days. While he was there they did an ECHO and told us he had Dilated Cardiomyopathy. One of the hardest things is not having a reason for why he had it, although the presumption was that a virus attacked his heart.
Max was stabilised with drugs and we were anxious to know what would happen next. We were told there was a 33 per-cent chance he’d get better, a 33 per-cent chance he’d need a heart transplant if he were to survive and a 33 per cent chance he wouldn’t survive. That was a huge shock. In a few days we’d gone from thinking he just had asthma to being told he may not live.
“We were told there was a 33 per-cent chance he’d get better, a 33 per-cent chance he’d need a heart transplant if he were to survive and a 33 per cent chance he wouldn’t survive”
After four days on ICU Max was sent to the cardiology ward. He started to improve and looked better and foolishly I even allowed myself to think he’d be back at school in January. But as the days went on, he started to deteriorate.
By January 2017, he’d deteriorated so much he was transferred to the Freeman Hospital in Newcastle for an assessment for a heart transplant. He went through various tests for a week and we were told by now that his heart function was terrible – 15%. After that week we were told that Max was going on the urgent transplant list and needed a new heart if he was going to survive.
He was losing a lot of weight and just looking sicker by the day. By February 2nd doctors were so worried that the worst would happen that they decided urgent action was needed to buy him time before a suitable donor could be found.
“He underwent major surgery to fit an LVAD, a mechanical pump that would hopefully keep Max alive long enough to get the heart he needed”
He underwent major surgery to fit an LVAD, a mechanical pump that would hopefully keep Max alive long enough to get the heart he needed.
He had a very rough time after the operation and he was in ICU for three weeks while doctors tried to stabilise him.
Eventually he seemed to settle down with his LVAD and started to gain weight. We tried to stay positive for his sake but deep down we knew that a heart needed to come sooner rather than later if Max were to survive.
By now his heart was so enlarged that it had put so much pressure on his sternum it had become deformed. Remarkably he continued to do well with the LVAD and by June 2017, he seemed to be getting stronger and was getting back to his usual positive self.
The call that a heart had become available couldn’t have come at a better time as he seemed in a good state to withstand the operation and recovery.; We had one false alarm when it turned out the heart wasn’t suitable in the end, but in the middle of the night on 2nd August 2017, we got the call that a heart was available. Just hours later Max was being wheeled into theatre.
Nine hours later Max came out of theatre with his new heart and literally a new lease of life. Words cannot express how grateful we are to the incredible family who donated their child’s heart.
It’s such a double-edged sword because while obviously we are thrilled to still have our little boy, the tragedy is that he is here because another child lost their life. That is so hard to deal with. We since found out that child was 9 year old Keira Ball, who died in a car crash. Keira’s father, Joe agreed to donate Keira’s organs in the most awful of circumstances. That decision saved four lives, including Max. We will be forever grateful.
On September 14th, Max came home. We take nothing for granted anymore and he just loves the simple things like being able to go outside and play.
“Transplantation is the option when there is no other option”
Max and our family have campaigned with the Mirror to ‘Change the Law for Life’ to one of Deemed Consent. ‘Max and Keira’s Law’ gained Royal Assent in March 2019 and will become law in Spring 2020. Our hope is that the publicity around the new law will result in more ‘known decisions’ and an increase in the consent rate, as has happened in Wales. People will still be able to ‘opt-in’ or ‘opt-out’ but the group in the middle will be considered to agree to organ donation. Any decision will need the blessing of next of kin.
We are grateful for every extra day we have with Max and although post-transplant life is not plain sailing, transplantation is the option when there is no other option. We feel as though Max was in the dark woods when he had heart failure. He is not out of the woods, but the trees are green and the flowers are blooming. Emma X